This is story of our daughters Taylor and Lauren, both with profound hearing loss, and the journey of getting and utilizing cochlear implants. Both have congenital deafness due to the Connexin 26 gene mutation.

Monday, May 20, 2013

We have recently completed Taylor's kindergarten roundup screening. She did amazingly well, scoring 99th percentile combined score. I have to say this was one of those moments where I wanted to go back to my former self, who was so worried in the year following Taylor's profound diagnosis, and tell myself not to worry, that someday things would be great... It's hard to believe how far she has come since June 2009 when she was diagnosed, or activated at age 15 months. Thankfully I am able to use my perspective of Taylor's progress to allow me to enjoy Lauren's natural language acquisition with her bilateral CI's and not ruin the joy of parenting this wonderful child with the worry that we had when Taylor was young.

The IEP meeting for her kindergarten year was a meeting that I was anxious about because of her performance in the screening. In spite of the high score, we were able to keep the IEP and continue to have Hearing Impaired Educator services and some access to the Audiologist. The HI teacher will work with her on listening and advocacy skills. We will have an FM system to use in the classrooms. We are so fortunate that there are soundfield speaker systems in every classroom in our elementary school and the teachers are already used to wearing a microphone. We are so glad to have Derek's current teacher as Taylor's teacher for the coming year. That is a comfort to us since we have already developed a good relationship with her over the past 9 months. We know there may be challenges to come but we are really feeling good about Taylor's kindergarten setup for next year.

Taylor continues to be a daredevil and a very physical little girl. Here are some recent pictures.

Taylor went parasailing on our spring break trip, and actually wore her ears during it. We did the waterproof bag, clipped the bag to her hair, and put the swim cap on. She was able to hear and talk the whole time! They saw dolphins and a sea turtle from up there (300 feet at the highest).

We have completed spring soccer with Taylor scoring up to 3 goals in her games. Her team was a great little group that we had played with in the fall too. T-ball is now starting; we haven't quite figured out the ears for t-ball yet. I'm thinking we will get her own helmet and then try to do the swimcap under it to secure the ears in place. ?? Any advice on this?

Taylor and Lauren at the YMCA Tumbling Room

Taylor just finished her dance recital for the year. There's nothing cuter than 4 and 5-year old girls in their dance costumes!

Dance Recital

I continue to be thankful for the bond that my girls have because they both need "ears" to hear. I hope they are able to bring strength and advice to each other in the years to come. There is such a bond between them already. The other night, Taylor was crying after her bath, not wanting to get dressed and ran to her room. Lauren picked up Taylor's ears and carried them upstairs to her. :)

Friday, May 10, 2013

These are all of Lauren's words at 21 months. She doesn't say all of them perfectly, but they are strong and consistent attempts at these words. We are so excited. The hearing birthday for the left ear is 2 weeks away.

I'm sure there are more, but these were the ones I could think of. She is off and running with spoken language! I am still waiting to see a consistent name for Derek and Taylor, and our cat mikea. She calls our dog maverick "maa".

Physically, Lauren is small (compared to how Derek and Taylor were) but ultra coordinated. She made it up our rock climbing wall on our playset at 20 months. We are constantly chasing her.

Wednesday, January 23, 2013

We are so excited -- Lauren has really started babbling consistently. She is the real age of 17 months, listening age of 8 months. Just this month, she has made good attempts at banana (nana), Maverick (our dog) (maa-buh), babababa, waffle, mmmm for M&M's and lots more. She has been, for the most part, silent or pointing while yelling, so this progress is most welcome. I am around a lot of other kids around the same age, and although I know it is not uncommon to be quiet or point/yell/grunt for a 17-month-old, we still hope for lots more! We want to know those ears are working, and working well!!

A nose-wrinkling grin for her Daddy!

Her language comprehension seems to be progressing very nicely. She will point out body parts when asked; eyes, ears, mouth, belly button, feet, etc. Today, I asked her "what's in your mouth?" and she spit out a clip. :) Oh joy! If I ask her if she wants to eat, she will head into the kitchen... We are seeing so many good things.

Now, we are going to work on really expanding her language comprehension. When Taylor was around this age, we did a program from Cochlear called Speech Sounds. Every week or so, we would focus on a sound, and expose her to it with songs, toys, books, food, etc. We are going to try that again with Lauren. It's a good way to make sure that we are adding constant variety into our daily language.

As for Taylor, she is four and a half, and has her first loose tooth. She is excited about that! We are starting to think about kindergarten. She is not using an FM system or speaker system in the preschool. I am wondering what the best approach for kindergarten in the fall will be. The one known factor is that since Derek is in kindergarten, I can probably get Taylor into the same class and have a teacher who we already have a relationship with. She has been great to work with so far. Any recommendations or advice on this topic are appreciated as I approach the IEP renewal meeting.